Category: acceptance

Note: this essay is based on my talk at The Wonder Years Workshop at the Edmonton Down Syndrome Societyon February 25, 2018. It was a true honour to speak to this group of new families who have babies with Down syndrome.

My youngest son is now almost 15 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ‘Down syndrome.’ I’ll never forget that moment – I can remember every detail – how the room smelled and even the shoes my doctor was wearing.

Aaron’s diagnosis was a significant time for me, bordering on the traumatic. The baby we expected was not the baby we got. I irrationally blamed myself, thinking I was too old and I had grown up too close to the refineries – irrational thoughts when I was neck-deep in grief.

As the years have passed, the intense grief has faded as I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.

We must honour the healing that comes from the dark times. For many months, I felt like I had a suffocating blanket thrown over my head. I was mourning the loss of the so-called perfect baby. I had to grieve for the baby I thought I was going to have in order to accept the baby I got. My baby boy did not allow me to stay stuck in the grief. Looking back, there were many factors that helped me move forward to see the light again. I want to share my story of gradually appreciating the wonder that is our son.

Coming to The Wonder Years is an important step to start building your own community. Finding other moms who had babies with Down syndrome saved me. Fifteen years ago, there were no moms groups, no EDSS office space – but us four moms with our tiny, flexible babies with almond eyes – found each other. We would get together every month at each other’s houses with our wee ones. Helga, Veronica and Karen were my saving grace. They knew what it was like to have an unexpected child with Down syndrome and we could talk to each other freely and without judgment.

Today Aaron is friends with these (now) teenagers, who he first met when he was 5 months old. He and Helga’s son Vincent spend a glorious weekend each summer on their family boat in the Okanagan – endlessly jumping off into the lake, tubing and engaging in rowdy burping contests. Aaron and Veronica’s son Andrew Face Time each other regularly – I can hear the two of them roaring with laughter on the iPad in Aaron’s room. These friendships in my new community began by helping me, a lonely sad mom – but have evolved into deeper relationships for our entire family, including our son with Down syndrome. Aaron needed to find his own people too. However you find your peeps – through in-person connections, via social media – it doesn’t matter. When you are ready, reach out. You will need each other throughout the years.

My personality is good for people – for love – like my family. –Aaron, age 15

Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. He has two older siblings who were 6 and 9 when he was first born. His sister Ella, now 21 and in third year nursing school, reflected back on how Aaron has made a difference in her life:

Aaron has taught me to be more patient and more inclusive, accepting and nonjudgmental at an earlier age than most of my peers. Honestly, it is cheesy to say but he truly is a bright light in this world. He’s kind, smart and HILARIOUS and he changes the lives and opinions of everyone who takes the time to get to know him. He’s why I wanted to be a nurse – not to cure sick people, but to see the spark that is so often ignored in vulnerable populations.

Aaron’s older brother shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And my husband, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. (For example, Aaron loves swimming competitively, watching Oilers’ hockey and eating hamburgers just like his dad). The majority of our children’s genes come from their mom and dad – it is only the one chromosome that is extra. Don’t forget that our kids are more like us than they are like Down syndrome.

My friend KC offers up this wisdom: throw out the milestone charts and celebrate every hard-won achievement. Only surround yourself with family and friends who love and support you and your child, she says. Make connections with other families within your new community and keep them close. And be flexible in the direction you choose – there are lots of decisions about therapy, preschool, recreation that will need to be made. You will make the best decision at the time and it is okay if that choice doesn’t stay the same. As your child grows and changes, you will too. This constant recalibration is hard for those of us who want control and a crystal ball in life. I’ll add: listen to your heart; it will always tell you what to do.

Speaking of hearts, please remember to be kind to yourself in this new life. Find yourself safe spaces where you can feel all your feelings. You don’t have to be strong all the time. Do more of what nourishes you. Often we search for meaning once we’ve had a child with Down syndrome – we do this through our necessary advocacy work to make the world a better place for those with differences. This is important work, but also remember to take time for yourself, your partner and your kids too. Changing the world is exhausting so it is crucial to take breaks and allow others to take their turn to change the world too. It is hard to be vulnerable and ask for help, but that’s what I’ve had to do.

As Natalie Merchant says in her song Wonder:

I believe, fate, fate smiledDestiny laughed as she came to my cradleKnow this child will be ableLaughed as my body she liftedKnow this child with be giftedWith love, with patience, and with faithShe’ll make her way.

You and your child can – and will – live a good and rich life. Have love, patience and faith (whatever faith means to you) and listen closely to your child with Down syndrome. You and your baby are valued, worthy and loved. I promise that your child, above all else, will be the one to help you find your way.

I hesitate to write about the effect of having a child with a disability has had on my mental health. This is for two reasons. First, my thoughts are kind of a mess. The second reason is because this child, my son Aaron – who is now 14 years old and has Down syndrome – is a beloved and wanted child. I fear adding to the bad rap that haunts disability. The truth is that the important stuff in life is hard. If it wasn’t hard, it wouldn’t be important.

(Please note that I write about moms because I am a mom, so I don’t assume I represent other moms, people with disabilities or dads or brothers or sisters. Their feelings are valued and significant too. But their stories are different from my story. Here goes…).

If I am honest, being the mother of any child is fraught with looming and inevitable loss. You help them attach to feel secure in the early years only to gradually let them go. This is heartbreaking work. There are many joyful and painful aspects to being a mother in general and being the mother of a kid with a disability is no exception.

When Aaron was born, I had the added work of grieving for the baby I expected in order to accept the baby I got. I had many years to figure out with my other children that there’s no such thing as a perfect child. (Usually this truth smacks you in the face in adolescence when the school principal calls you). With Aaron, the realization that no child is perfect came when he was a baby – instantly, right at his diagnosis.

This grief has faded but it has not entirely gone away. Some parents feel sad on their child’s birthday. I feel sorrow when I spot a group of teenage boys at the mall. Aaron is not part of that group and this causes a sharp pain in my heart. I think this has to do more with me than him, as I have always felt left out and have struggled to find belonging. Unwrapping my feelings from his feelings is difficult but essential work. I also grieve for my older two children who have grown up and left the nest. I miss them a lot. There is loss there too, but in a different way.

Having a child with a disability makes me feel particularly vulnerable. In a world where we are supposed to be strong, feeling vulnerable is extremely uncomfortable. This is especially true if we’ve adopted the ‘mama bear’ identity to advocate for our children.

People tell me I’m brave and strong. This is a façade. Mostly I am scared and weak. I cover up my vulnerability with anger that is specifically directed as outrage at the health and education systems. (See my Twitter feed for evidence of my outrage).

Many families get caught in the ‘busy trap’ to avoid feeling pain. They sign their child up for all the therapies in an effort to have the ‘best kid with Down syndrome ever.’ We did this too. Being self-aware of the reason you engage in therapies is vital: is to help your child be the best they can be, or is it to fix them, to make them as ‘normal’ as possible? Be careful, for you can lose both you and your child in the fixing. Accepting all your children for who they actually are – not for who we want them to be – is a long, never-ending journey.

There can be struggle to make meaning. Some of us try to change the world in an effort to find purpose from our child’s diagnosis. This is exhausting. The world doesn’t want to change to accept our children. We can only change ourselves. It is our job to equip all our children the best we can to allow them to grow up in a way that they are true to themselves – disability or no disability.

In my humble experience, the most important thing you can do for your own mental health is to allow yourself to feel all your feelings. Surround yourself with people who love you unconditionally. Don’t be afraid of being still. Find other parents and lift each other up. Be as kind and gentle with yourself as you are with your own children. All this can help you find peace in your heart. (Note: I struggle to find peace in my heart every single day. This is okay because I’m perfectly imperfect too).

I am grateful to Dr. Yona Lunsky for inspiring me to speak up about my mental health and to write this essay. xo.

It was your shitty lifestyle that gave you cancer, and if you don’t change your shitty lifestyle, your cancer will recur.

This was the key message to a two-day workshop for cancer patients that I attended last week. Half way through day two, I stood up and walked out. If my time here on Earth is limited, I don’t need to spend my days being lectured to about this kind of sanctimonious crap.

Instead, I went for a long walk, met my husband for a lunch (I had a salad, just for the record, since I’m feeling defensive now), went for another long walk along the beautiful Vancouver seawall and met up with a dear friend for tea. This seemed like a healthier way to spend my time.

I signed up for the workshop for my Summer of Healing after my breast cancer diagnosis and treatment this year. I thought: I’ll show up and be open to learning. I lasted a day and a half before the blaming, finger pointing and judgmental tone of the lectures from the ‘experts’ did me in.

The room was filled with people with cancer who had lived healthy lifestyles. I’d call this the classic west coast way of life – in this case, there were many fit, nutrition-conscious women who happened to have breast cancer. (And they were pretty pissed off about it, too). There were also three young people whose cancer had recurred.

The presenters did not understand their audience. I’m not sure how blaming people with cancer for getting cancer in the first place is helpful. Patients do not need more fodder to add to our own feelings of guilt. We are also not stupid. We know that being active and eating healthy is important. No kidding.

Even if I smoked, drank, was obese, ate too many doughnuts, warmed up my food in plastic containers in the microwave, does this mean that I deserved to get cancer or that I am less deserving of care or compassion for my cancer?

The ‘it is your own fault you got sick’ mentality is what is feeding the repeal of Obamacare in the US with the BCRA Act. I follow this awful Act carefully on Twitter and feel deeply outraged for my American friends. We’d be so hooped if we lived just a few kilometers to the south in the US – my husband and I are both self-employed, we have a kid with a disability and now I have cancer. We’d also be bankrupt if we didn’t have proper insurance coverage.

This patient-blaming attitude is pervasive everywhere, including in Canada. (Although I’m extremely grateful for our Medicare, which is our quasi-universal health care coverage for hospital and physician office care. This means I don’t have to pay for my medical care because I got sick).

“Maybe you will live a healthier lifestyle afterwards,” a friend said to me on the phone, not so helpfully, when I was first diagnosed. I was lying on the couch recovering from surgery. This implied blame is thankfully mostly unspoken, but was the overt attitude at this ‘cancer care’ workshop.

The truth: cancer is a combination of genetics, bad luck, rogue cells – and yes, environment and lifestyle are factors too. But there is no one cause of all cancers – cancer is much more insidious than that. Our own cells turn feral on us for all sorts of reasons. If researchers knew what that reason really was, we would already have a cure for cancer. You can’t prevent cancer by doing any one thing. (Read about a recent study from John Hopkins about the topic of risk factors here).

The real reason I think people are blamed for getting cancer is because we are all terrified of becoming vulnerable, needing help and dying. We think that we can do all sorts of things to avoid death. Alas, there is a randomness to living that is out of our control. There was a 1 in 700 chance I’d have a kid with Down syndrome, but I had him anyhow. (Many feel my son’s birth could have been prevented, but that’s for another blog post). The current stat is that 1 in 9 women in Canada get breast cancer. I happen to be one of those women.

I know I have lived through many women’s biggest fear. Once you start with the boob-squishing mammograms, the idea that you might have breast cancer begins floating around in your mind. I thought I was immune from breast cancer because I breastfed all my children. That was an arrogant, naïve and mistaken notion.

I’m not suggesting you don’t live a healthy life, whatever that means to you. That would just be silly. But…stop the patient blaming when people do get sick. None of us are going to escape this world without acquiring some sort of illness and eventually dying. This is part of life.

My healthy lifestyle changes since getting cancer include: holding those who showed up for me close, more hugging, going to therapy to finally figure out how to love myself, meandering on long walks, marvelling at sunsets and remembering to breathe. I still eat cheese, lie around in my bed watching Netflix and enjoy a tall glass of cider. Everything in moderation, folks. My best advice is to go forth and live your life under the guise of joy and not fear.

Cancer workshop organizers, shaming patients is not going to lead to behaviour change. (See this great post by Carolyn Thomas about ‘non-compliant’ patients). Being perfect does not prevent cancer. Try treating those who are suffering with respect and compassion. Suspend your pious judgment and meet people where they are at. People who have cancer need your help (not your disdain) to learn how to heal, inside and out.

I’ve never struggled this much to prepare a presentation. I was asked to speak to the Rare Disease Foundation‘s parent support group in Vancouver on the topic of work-life balance. I pulled some quotes. Wrote speaking notes. Created some questions. The presentation was last night and still I floundered. I have no definitive solution to how to achieve work-life balance, especially if you have a kid with a disability, like I do.

How do you balance work and life? I have no freakin’ idea. I didn’t know how to do it when I had two typically-developing kids in the 1990’s, and I most certainly don’t know how to do it now, with my remaining complicated kid in my nest.

I called my talk Leaning Out to temper Facebook COO Sheryl Sandberg’s book, Leaning In. Her book is described as ‘compelling women to reach their full potential at work.’ Well, in November, I had to resign from my job because I couldn’t figure out how to be available to my kid and to keep working in a staff position. So I’ve leaned out. Way out.

I used to believe that you can have it all, but not all at the same time. My youngest son has taught me that having it all is overrated – what is this ‘all’ anyhow? A big house, full-time job, annual tropical vacations? I think we’ve been sold a big fat lie about what’s really important in life.

My talk was a jumble of what I’ve learned over the past 23 years of motherhood. In the paid work world, I’ve worked full-time, part-time, on contract and as a freelancer. Other times I’ve immersed myself in unpaid work. Some days I fill with grocery shopping and sitting on a log, watching the dogs at Kitsilano dog beach. In leaning out, I’ve been humbled about how much I don’t know. It was so easy to adopt an identity when I had a job – it was handed to me in a position description. Now, I’m making it up as I go along.

Here is some inspiration that I lean on instead to find my way. As Ian Brownsays, having a kid with a disability means recalibrating all the time. Most of this is not in your control. In redefining my own identity, these three philosophies help.

1. Reject the PerfectBrene Brown describes this best in her TEDTalk, The Power of Vulnerability. She says, “imperfections are not inadequacies; they are reminders that we’re all in this together.” We must stop pretending everything is okay all the time and allow ourselves to be vulnerable. To do this, we have to find safe places to let our guards down to stop being ‘special needs mom’ cheerleaders – like with other moms over coffee or Facebook and in support groups like one I spoke to last night. It is so important to find people who demonstrate that they’ve got your back, no matter what. (That, and never clean your house before another mom comes over – this sets a really bad precedent).

2. Embrace the Slow
Having a kid with a difference forces you to get off the ‘regular person’ treadmill of life. Life is busy, yes, but in a different way. You get transported to a different planet that you never bought a ticket to – one with great frustrations with hospitals, society, social services and education systems. There are times of great slowness – while helping a child get dressed, or waiting for a whole sentence to come out, or summoning all your patience for a kid to finish their meal. In these slow times, it is so important to embrace the small joy, as Lisa Bonchek Adamsgently reminded us.

I’m also fond of this New York Times Essay by Tim Kreider called The Busy Trap. In it, he says, “busyness serves as a kind of existential reassurance, a hedge against emptiness; obviously your life cannot possibly be silly or trivial or meaningless if you are so busy, completely booked, in demand every hour of the day”. Carl Honore’s In Praise of Slowbook and movement also offers similar sage guidance.

3. Remember that unpaid work is work too.Finally, I suggested banning the words ‘just a mom’ and ‘volunteering’ from your vocabulary. Work is work is work. We focus so much on what we do and how we do it, we forget about the why, as Simon Sinek reminds us. Caring for another vulnerable human being is the most important work there is. It is what makes our world go round. Our society doesn’t value unpaid work, but that doesn’t mean that we shouldn’t value work that doesn’t come with a paycheque. Think about writing a Mom Resume that outlines all the skills you’ve acquired since your child was born. Writing it down gives it power and makes it real.

But sadly for last night’s audience, I had no real wisdom, no solutions, no fixes, no way to achieve this elusive work-life balance. I mostly talked out of my butt, and used other people’s words as inspiration. I was pleased to spark conversation, and it was heartening that others felt safe enough to open up about their own struggles.

Accept that recalibrating is okay and to be expected. Talk about your imperfect life in safe spaces. And value the work you do, even if others don’t. As I seek acceptance of my current messy life so I can find peace in my heart, I hope you can too – in your own way and in your own time. xo.

I’ve been agonizing over preparing a presentation all week. For creating a talk is like crafting a story – it is carefully pieced together to engage the audience early on, to create a safe space for listening, to allow them to feel. This is trickier than you might think. I say this from hard-fought experience of crashing and burning onstage– misreading your audience is the absolutely worst thing you can do when you are behind a podium. I live in fear of it. This is a hell of a way to make a living.

I was asked to speak to all the teachers at my son’s high school about What Inclusion Means to Me. There would be about one hundred educators in the audience on their Pro-D day. I sweated out my approach, talking to the teacher in the Access Program (Burnaby’s special ed) who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the provinces. I was desperate to understand my audience, to not misstep, to represent other families well, for I had a lot of skin in the game. This is the high school where Aaron would be for the next six years. I could not screw this up.

I had spoken once before to a teacher/parent audience on this same subject, almost three years ago in Alberta. My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were travelling on a strong academic path. One mom had angrily protested from the back of the room: your kid is taking away from my kid’s teaching time! I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there really such a thing?). I drew upon others for expertise in my talk. I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s great bowling video. I leaned on Ian Brown’s wisdom about the value of people with disabilities. The moms from my Family Inclusion Group Facebook page kindly offered up some wonderful quotes about our kids being brave, and presuming competence. I remembered the young man, Ryan, who has autism and graduated with my daughter three years ago, and read that little essay. Two local family leaders, Karen Copeland and Suzanne Perrault, helped me immensely with pep talks and information. I was very aware of not being self-serving – not only concerning myself with my own son’s experience, but with his colleagues’ experiences, too: those who used wheelchairs, those who were non-verbal, those identified with ‘behaviour’ challenges. I had many people behind me in spirit for this extraordinary opportunity: for a mom taking up a morning in a high school’s Pro-D day is a rare sight indeed.

And what does inclusion mean to me? In the end, I talked about our journey with Aaron – from when he was first diagnosed (the baby we expected was not the baby we got) to my struggles with my own fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974 (if you are going to have a stereotype, at least have an up-to-date stereotype). I acknowledged the good work teachers do – how busy and exhausted they are too, and asked them to reflect on their why – why they chose teaching. I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities. I invited the audience to think of one way educators and the other students could include the kids from the Access Program in the school, no matter how simple: learning the kids’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My goodness, as I write this out, I realized I covered a lot of ground. I’d had better practice what I preach about presentations, and that is: Identify your intention. Pick three key messages. Know thy audience.

My intention was to touch hearts to change minds. My key messages were about the value of children with disabilities (the disabled do the work of love, says Ian Brown), expanding the definition of diversity to include different abilities, and to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying. This topic is deeply personal to me, as Aaron’s school experience is everything to us. We chose to live in Burnaby based on the school district. We bought a condo close to the school. I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too. Maybe they had someone with a difference in their family. Maybe they were remembering the feeling of being left out. Maybe they were triggered to recall why they chose teaching. At the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me. It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how. This desire is everything. Change happens with just one step at a time – the first step is the most important one. This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging. It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion. These are the exact same messages I share with health care audiences, as I’ve realized that these concepts are deeply universal.

In the end, for me, everything always circles back to Raymond Carver:

Beloved on this earth. That’s what I want for my children, for myself, and for you too. xo.

In 2008, I travelled to Washington DC to campaign for a young long-shot presidential candidate named Barack Obama. I joined my American friends to go door to door in Virginia to identified Democrat households. We were tasked with reminding folks to vote and seeing if they needed a ride to the polling station on Election Day. Some people said Canadians had no business being in the US for the campaign, and maybe that’s true.

But I was there because I believed in Obama. I believed in his great American story, I believed in his offer of change for America, which would – and did – have vicarious ripple effects in my own country. I remember walking between the sprawling mansions and the tightly packed town homes in Virginia, marvelling at the two contrasts over a few short blocks. At one rickety house, we memorably danced with some older ladies on their front porch – they were giddy at the very prospect of a President Barack Obama. Later, we joined one hundred thousand people packed into a Virginia farmer’s field, patiently waiting for Obama’s last campaign speech. He arrived late and tired, sorrowful about his beloved grandma’s recent death. He did what he had to do and still fired up the crowd to get out to vote. And vote they did.

The next night, I was privileged enough to attend an election party in DC. Once CNN announced that Obama had won Virginia, the election was over. Strangers whooped and hugged each other and burst onto the streets, unable to be contained inside. In DC, the bluest of all of America, people were laughing and dancing, spilling onto the road with the honking cars, so hopeful for their futures. America was now everybody’s America, which is what this beautiful photo by White House photographer Pete Souza captures so well. This little boy could be president one day. That shining star entered his reality on Tuesday November 4, 2008.

Eight years later, I have no clever commentary about last Tuesday’s election results. This time I had more skin in this race. Earlier this month, my eldest son received his American green card to solidify his life in the US with his new wife, who is Mexican American. I now feel only a chill of fear for their future.

Zoom to a few days later. Just for fun (and in the disability world, what we call respite for beleaguered parents) my husband and I bought tickets for a Funk and Soul Dance night. The dance floor was tightly packed with a whole world of people: suburban 50-ish white people (wait, that was us), old Italian nonnas, gaggles of young Asian girls, and yes, many black people too. The crowd was a cross section of the diversity that is our planet Earth – old/young, fat/thin, rich/poor. At that point our differences didn’t matter. We were all laughing and dancing together, the music helping us forget, all as one for a few hours deep into the rainy night.

Moving slowly the next day, I felt another wash of melancholy. From my throne of white liberal Canadian privilege, I recognized what I was mourning. The US election had unearthed a profound fear of ‘the other’ – which I now realize had been there all along – I was just sheltered and naive enough not to see it. Millions of people voted (and not voted) to slide backwards towards a more homogenous, less tolerant nation. Every day, I am reminded that my youngest son is an ‘other’ too, and I also fear for him in this (not) brave new world.

In Canada we must be vigilant to ensure more intolerance and hate does not bleed across our borders. Do not think that it cannot happen here, for it already has: in how we treat our Indigenous peoples, in the rising force of people like Kellie Leitch and her ‘Canadian values’ movement. Do not be fooled.

I oscillate wildly between preaching love + kindness for one’s neighbour and vibrating with white hot outrage at the injustices that litter our world. Now is the time for us all to be wary my friends, and to stay alert – as others have been doing while I’ve stupidly had my head in the sand.

We are all one. We all belong. Do not allow anyone to tell you any different.